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Birthdate Gender Heritage Nationality Alpha type Alpha gene Diagnosed Siblings Children Grandchildren |
Joyce I live in Texas. My favorite quote is "The choices we make dictate the life we lead."
6/11/2006 I was told I was MZ back in 1983 when my, almost 2 yr old son was diagnosed with ZZ. To the best of my knowledge I am fine with no problems, so far that is, but recent research on the Internet, has led me to believe I need to be watchful. Back then I was told as a carrier my risk of problems was only slightly greater than a "normal" person's risk. Up until recently I guess I have been in a sort of denial regarding my son's condition and the health of his two sisters and my own. Back when the original diagnosis was made, there was so little known I hadn't realized how much has been learned over the years. Last April 2005, my son went into the hospital near death because of some virus they never did identify but he was given 6 to 9 months to live. He was told then that he had severe cirrhosis was told he could no longer work and was referred to a specialist but since he didn't have any insurance we couldn't get any to see him until his Medicare kicked in. It did several months later and we started seeing a liver specialist but she told us because of his pulmonary hypertension he wouldn't survive any surgery and she referred us to a pulmonary specialist who started him on remodulin(?) therapy. By the time the medication did the trick and lowered the pressure in the arterial vein to the lungs, he had started receiving disability and lost his SSI and thereby lost his Medicare coverage and lost his access to the liver specialist. He is now being seen by doctors at the local charity hospital hoping to survive until his Medicare kicks back in in April of next year. My son has severe liver disease, just learned last week he also has developed emphysema and has arterial pulmonary hypertension. My two daughters are also ZZ, but at least outwardly, show no symptoms at this time. Their PCP is aware of them being Alphas and the liver levels are checked once a year. They do not have any history of lung problems so far.
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